Sorry I wasn’t able to write Friday. We tried to put Savayah to bed, and she started screaming and thrashing in pain. We got her calmed, and she fell asleep for about 5 minutes, but woke up in pain again. We ended up taking her to the ER because she can’t tell us where the pain is, but she’s grabbing the side of her face. We weren’t sure if it was her ears or a cavity, so to be safe we took her to get checked out. Unfortunately it was already past 10 pm and that meant ER. Turned out both her ears were infected and bulging, so an antibiotic and some Ibuprofen were prescribed. She’s doing much better now, but having to give her medicine is a struggle every time.
We normally don’t give her medicine, try to let her body heal itself, build her immune system and whatnot. Also we don’t want to get her body used too it, and since we don’t know exactly everything in them, we don’t want to put more crap in her body than we have too, especially when trying to detox her system.
Anyways Bella has also had a fever since last she went to the ER. I think Friday morning we had to take her to get cultures done as a way to avoid the ER, but the nurse who drew her blood also wasn’t sterile and kind of bitchy. She removed the access cap, didn’t wear a mask until we pretty much begged and left her port access open to the air in the room, which was full of other people getting treatment, so it’s been an added stress.
Other than that she’s been having body wide pain, unable to move around much, hardly sleeping, and we’re just waiting for today. Today we have to (hopefully) speak to her Infectious Disease doctor again about the hospitalization, and subsequent spinal tap. Even talking to her PCM about it via email to voice our concerns. We’ve decided, since she ALREADY did this in January, came off all medications and they watched her become SO severe she went paralyzed, lost her hearing and sight and was in so much pain she didn’t even know where she was because she couldn’t think, they got so scared they gave her her IV antibiotics and over 270 steroids per month (which now she reacts very badly to vital wise), not only this infectious disease told us we have done every test possible for the Lyme, there was nothing else and Bella confirmed that to me as well, the spinal tap which he warned us was very dangerous for her and her EDS was very risky, and also they were just finished with it, not looking for anything specific just casting another net (because they don’t want to treat Lyme, they have looked very hard to blame it on anything else, yet still haven’t been able to pin it to a wrong diagnosis just to please themselves either). If possible,and we are forded to come off all meds again for god knows why, we need to try and push it off a week so we can make sure she has everything she needs while hospitalized, especially with her diet; it’s hard to eat while hospitalized, we are so broke from the testing and her meds we couldn’t even afford TP if we wanted to. Without being able to prepare food there for her, we still have to put non perishables together and right now every last cent we’re able to stretch goes to feeding us for the week. We full heartily disagree with making her body prove AGAIN just a few months from when she did it last, with no new testing being done for it, nor any new way of monitoring her. We were told already each slide back in her health could be permanent or even cause much worse..
We NEED her to be hospitalized (weeks ago with her very unstable vitals actually) and given the appropriate treatment for all the Lyme and fatal infections already laid out by the world renowned Lyme specialist they set us to, over a year ago and/or similar protocols for this IMMEDIATELY. In which if they would have treated her 5 years ago before sending me home from a war zone to watch her die, I would now be 6 years away from full military retirement, Bella would have continued her career and raised Savayah in her own perfect way, but also would be 2 organs richer, one less heart surgery, around 100 less hospital stays, 350 ER stays (pretty sure there is more), over 100 wrong medications (some of which almost killed her), over 2000 less IV meds, over 70 stabs into her chest for Port access, 300 less IVs in her arms and neck, OVER 4,000 different individual labs ordered looking for anything else but Lyme, 1000s of less bed pan uses, 1 less port, 1 less wrongly placed internal heart rate monitor, 2 less Mayo clinic trips, 3 less trips to New York, 2 less threats of foreclosure, less brain swelling, over 1000 close calls with death, the loss of friends and family that don’t believe she is sick because it wasn’t diagnosed for so very long (or those who do not care to see us suffering so just leave us to do so alone).. and her being able to walk, drive, and live. It’s too much for anyone to handle.
Unable to afford daycare, Savayah will be with us too, making it that much harder. Let alone the dentist appointment for Wednesday we may have to re-schedule if we can’t come up with the payment.
It’s just been a very rough month. I start classes next week online to try and bring a little extra in, but it’s my last chance at school before I can’t do it anymore. I’ll have to do my best to complete coursework in hospital rooms from my phone. It’ll be a struggle, but I have to try so we can survive a little better. All the outside labs the doctors ordered, but ignore anyway, are too expensive. We don’t know how to get Savayah tested at this point (which they recommend right away!) without help.
Her doctors are now telling us they sympathize, and they know she’s sick, and they think there’s an organic cause to all of this, but don’t agree with ALL the evidence THEY ordered. They don’t trust their own labs, Armin Labs, Ingenix, the specialist etc. All saying she has an active infection of Lyme and several co-infections. We’ve done everything they’ve asked of us. Spent thousands we don’t have on testing out of pocket they ordered. Saw a specialist out of state THEY sent us to to get the diagnosis and treatment plan, and then they ignore that too. Now they want to make her worse, taking her off her medicine just to see what happens AGAIN for what, they haven’t told us. This may be the thing that happens and makes it so she can’t get better if we haven’t already passed that point.
It’s horrible on her as is, let alone inducing the worst of the symptoms because the pile of proof they ordered for a clinically diagnosed disease just doesn’t seem to be enough. We’re scared. Simple as that, we can’t get help, she is so severe even right this very second, just holding on. It’s like they’re just trying to slap non-compliant on her so they don’t have to try anymore. She’s been poked, prodded, examined, biopsied,many surgeries without anesthesia OR ANY MEDICATIONS. and brought to near death so many times, just because they don’t believe it’s Lyme or that it exists contrary to what everyone else who’s tested for it thinks.
So this week or next, she will be hospitalized. It will get bad. At the very least we’re going to try to get them to give her her treatment plan when they can’t find something else. If she makes it back for this at all. After this the only next step is an autopsy by a PRIVATE pathologist, which will only prove once again she has Lyme, only difference is that it would have killed her at that point.
I love my wife. She doesn’t deserve any of this. All she wants is to be able to be a mother to our daughter. Not writhing in pain in her room, vitals near death being recorded, locked away hoping she doesn’t miss out on too much. Savayah is progressing quickly now, and it’s even worse for her missing out. New words, listening better, imagination, drawing, and playing nicely. Simple things most people take for granted, huge improvements for Savayah, and she misses most of them because this sickness has taken her life from her. The life she brought into the world is growing, and she misses almost all of it, unable to get up, unable to even think most of the time, because she can’t get treatment.
We’re at the end of our ropes, grasping at straws. Hoping one doctor will be able to help. The ones willing to help just don’t believe the labs they ordered, or all the funcational med doctors who have called her doctor to say it was lyme that are also at the same hospital, but every doctor and specialist has said it’s a infection they can’t find,written it out to the NIH as well. Her cardiologist said her heart is fine, something else is causing the tachycardia and pain. Her neurologist said it’s an infection or the electrical pathways to her brain. Infectious disease says I don’t know, lets do something super hard on you just to poke around a bit more again and again and again and that straight out they do not believe in lyme disease (as if its a religion and not a pathogen?). PCM, just kind of puts it off on them, and no matter what the specialist they all say the same thing. It’s an infection they can’t find, but it’s effecting all of her systems. It’s just not the infection they keep finding apparently. That can’t be it…
So we don’t know 100% will happen in the coming week, but one way or the other it’s going to get really bad, and we only hope she can get through it. She’s a warrior. She’s going to make it, WE NEED HELP please with donations for her treatment and savayah’s testing, with $4000 a lyme doctor down the street would treat her himself for a few months. She deserves much better than all of this. Her ssdi case is going to federal court and will at least be a year away.. for only $700 a month..
Thank you for reading, please donate and share. #helpthehero on social media. We’re falling apart, hoping for a way. We don’t know what to do. We need help, and don’t know where to look. We’ve tried the news, lawyers, specialists, senators, a congressman, everything we can think of, and with a mountain of proof they still want more. They still don’t believe and if they do we still don’t get help.
I’ll update as soon as I know our plan for the hospitalization. Keep us in your prayers, it’s gonna be a bumpy ride. Still trying to figure out how to get the audio files uploaded, so those will be coming soon as well. Thank you for listening.